Daredevil on wheels takes to the sky
Alan T. Brown’s mission to improve life in a wheelchair
by Andrea Freygang
Born and raised in New York City, Alan T. Brown was 20 when his life changed forever. Down in Martinique at Club Med, Brown went swimming, not knowing a storm was brewing in the water nearby where two oceans cross, creating unusually strong undertows. When the waves came in, he was caught in an undertow, flipped upside down and heard his neck snap. Instead of learning how to follow his Orthodox parents in the biggest mitzvah of preparing bodies for burial, Brown had to figure out how to live. Now 42, Brown has dedicated his life through his public relations and marketing skills to creating a better quality of life for people living with various spinal injuries through the Alan T. Brown Foundation to Cure Paralysis. Brown, who spends his life in a wheelchair and has nine screws and two metal plates holding his head on his neck, says he never stopped working, starting with his foundation. Since the accident, Brown has married, had two kids and started his own public relations and marketing business stemming from his involvement with getting SlimFast started with celebrity endorsements. He has also worked with the Florida Marlins and has organized advertising campaigns for a number of celebrities
How did the foundation come about?
The foundation started six months after my injury. I started figuring how to get my life back together. It started off as looking for a cure, but went into outreach. You go into the hospital and help people realize there is life and everything will be ok. There are hundreds of them…and none of us ask and want our world turned upside down in ways you’d never believe.
“G-d did this for a reason and I have to carry out the mission—and not let the system take me down. It will not beat me.”
What is the focus of the foundation?
A lot of it in the beginning…was there was going to be a cure and we would get out of these things (wheelchairs), but you move beyond that. I think a cure will happen, but I don’t know about in my lifetime. I’ve had six surgeries, had to have my back fused, with two bolts and hinges holding my back together. But now it’s about a better quality of life.
I drive my own car, I skydive, scuba dive, go to the gym six days of the week, but many things I can’t do myself. I need help with everything—cutting food, pants, bathroom, hanging with my kids. But I am a whole person, and have achieved many of the goals I’ve set for myself. My main focus is whatever legislation and awareness (I can get). It’s all the same message—a cure is great, but quality of life is what needs to happen. G-d did this for a reason and I have to carry out the mission—and not let the system take me down. It will not beat me.
What needs to change?
Insurance. I had the same policy for 20 years and they switched it and I had to pay out of pocket. I need medicine, nursing care around the clock. Insurance says my wife should be my caregiver, but I can’t do that—we would be divorced. I had a new policy that included hospitalization and nursing homes only, but I’ve had friends die from that. You go there, you start to think you’re dead. We want to live—I trained to do two New York marathons. And they wouldn’t pay for supplies and gave me this huge, bulky wheelchair that cost $38,000 and I hated it. It made me feel my injury more and more. I found this I-Bot wheelchair that…can go on gravel. It’s actually an unbelievable device that made me not feel paralyzed anymore. I’m up (the chair allows him to stand) talking to people. In the PR business, you need face to face. It completely changed my life and I became a spokesperson, but they stopped production...because Medicaid and Medicare stopped paying.
So what is the next step for you?
I’ve been giving money for 20 years for a cure, but I want a roadmap to tell me and my friends how to survive. So I went to Christopher Reeves—we were friends— and told him they’re not producing this wheelchair anymore and we started a study to show that close to six million people have some disability related to paralysis and spinal cord. The cost is higher and higher, but the support in less and less. I’m going to Washington, D.C. to say why shouldn’t we be able to go to a friend’s house or go to a soccer game or shoot baskets and get up high, which that chair allowed me to do. When I went to Walter Reed (Veterans’ hospital) I saw things you wouldn’t believe. They’ll pay 80 million or billion to put a young kid into harm’s way, but they come home and can’t get a new $22,000 wheelchair.
How will you fix this?
I am on a mission right now, to share as much as I can that everyone in wheelchairs should get a fair shake. I don’t sleep well at night, but I gotta do this. I’ll keep popping into D.C. to get in faces till they understand. My mission is to make sure I take my PR expertise and sing this to everyone I can to raise awareness and get as many celebrities and athletes involved to do what I’ve got to do to make a difference, though I don’t feel like I’ve done even close to enough.
“My mission is to make sure I take my PR expertise and sing this to everyone I can to raise awareness and get as many celebrities and athletes involved to do
what I’ve got to do to make a difference.”
How has your Jewish faith helped?
I sometimes ask why, but my religion has kept me grounded. G-d did this for a reason so I’m just going to go with it. I thank G-d for people who help me, the people who are around that care for me. I take my whole background, growing up in an Orthodox Jewish home (since I) grew up to be somebody to help. It has helped since day one and a lot more now. There are a lot more people, a lot more problems and the system is harder and harder. But G-d gives me the strength to move forward to help these people and that’s what I’m going to do.
The Alan T. Brown Foundation is a not-for-profit foundation, established in 1988 to support scientific and medical research, and has recently focused on quality of life issues. The foundation regularly hosts events, primarily in New York, but Brown is based in Hollywood where he runs PrimeTime Public Relations & Marketing. Visit www.atbf.org for more information on the foundation and to find out about upcoming events or ways to get involved. Visit www.ptprm.com to learn more about Brown’s marketing company.